The Blog

The latest episode of BioTalk is with Dr. David Prentice of the Lozier Insititute on the world’s first GMO baby born this summer using the “3-parent IVF” method called “maternal spindle transfer”.

If not for the Aderholt amendment to the 2015 omnibus spending bill, which prohibits the Food and Drug Administration from entertaining any submission that proposes “research in which a human embryo is intentionally created or modified to include heritable genetic modification”, that baby would have likely been manufactured in the United States.

Preventing mitochondrial disease is a good and noble goal, but this is not the way to go about doing it. Allowing germ-line modification for mitochondrial replacement to proceed sets a dangerous precedent and may only be the beginning.

3-parent IVF is already being used in the Ukraine, not to treat mitochondrial disease, but general fertility treatment.

Let’s keep human genetic experimentation out of our country!

The presidential election is obviously important, but even if you’re one of the many people this time around who find yourself in the unfortunate position of feeling like you can’t vote for either major party presidential candidate, go to the polls and help elect good people to your state legislatures, Congress and other local positions. In many ways your votes there are even more important than your vote for president — in terms of actually having an impact on legislation.

I’m back with Rebecca in the latest episode of BioTalk. This time we’re talking about genetic testing and what could happen to your DNA after it leaves your body.

Or Audio only:

Generally speaking, genetic testing is ethically neutral. In fact, in some cases it may be medically, and therefore ethically, necessary.

But, whether you’re getting tested for legitimate health reasons or just to find out “who you are” and where you came from, you should be aware that once your DNA leaves your body you have zero control over what happens to it.

This is important to understand because there is a lot of money to be made on harvestable biological material.

A recent example of this is the news that the consumer genetic testing company, 23andMe, has been selling access to its enormous DNA database to more than 13 drug companies.

One, Genentech, anted up $10 million for a look at the genes of people with Parkinson’s disease.

That means 23andMe is monetizing DNA rather the way Facebook makes money from our “likes.” What’s more, it gets its customers to pay for the privilege.

But consumer genetic testing companies aren’t the only concern. Rebecca noted two cases in the past involving patients whose blood/tissue samples, submitted for cancer treatment, were later developed into commercial cell lines for research without their consent:

As Rebecca noted, John Moore brought his case to the California Supreme Court, which ruled that a hospital patient’s discarded blood and tissue samples are not his personal property and that individuals do not have rights to a share in the profits earned from commercial products or research derived from their cells.

Last week I was on the Mike Allen Show to discuss our cultural confusion about suicide and the troubling trend toward chimeras.

Suicide Confusion

September was National Suicide Prevention Awareness Month. Last September was also a big month for assisted suicide advocates. Among the headlines last month:

The first minor was euthanized in Belgium since Parliament lifted all age restrictions in 2014.

Fourteen-year-old Jerika Bolen died after ceasing medical treatment for Spinal Muscular Atrophy. While not technically an assisted suicide, she has been cheered on and held up in the media as the latest poster child (literally) for the “right to die” movement.

On top of that, I just became aware of the fact that the American Medical Association has decided to reconsider changing its traditional opposition to assisted suicide to neutrality. I don’t know how I missed that, but should they do so, it could be devastating to the efforts in the legislature to block dangerous legalization.

Once again, we can’t have it both ways: suicide prevention for some, facilitation for others. In fact, a recent study has found a statistically significant suicide increase in states that have legalized assisted suicide.

Chimera Concern

Not all introduction of human cells into animals is ethically problematic. For example, growing human cancer tumors in mice to study disease processes and evaluate treatment strategies.

What the NIH is proposing funding, however, is putting human pluripotent cells into very early animal embryos. The problem is that they don’t know where those cells are going to go. And the worst case scenario here would be that the human cells could end up forming human gametes (eggs or sperm) or brain cells within the animal’s body.

I’m pleased to see that the USCCB weighed in during the NIH’s brief public comment period. The full text of the comment letter is available here.

As I mentioned to Mike, the important thing to keep in mind here s that currently this research is perfectly legal and being done here in the United States — including gestation of these chimeras on research farms.

If the NIH isn’t going to do anything to actually put a stop to the research, the very least they could do is not make it even easier by giving them Federal funds.

By this point, many, if not most of you have heard that the NIH recently announced that it will probably lift a ban on funding for animal-human chimeras.

To be clear, there are no federal laws prohibiting any of this, other than one statute that prohibits gestating a human baby in an animal womb (fetus farming).

Last September, the NIH imposed a moratorium on funding for any experiments involving the introduction of human cells into early animal embryos — putting the brakes on big scale abuse.

However, an article in MIT’s Technology Review earlier this year described some experiments being done with funding from the US Army and from the California Institute of Regenerative Medicine which involved the pregnancies of human-pig or human-sheep chimeras, though none were brought to term.

So, what the NIH is considering is whether to make this research even easier by giving them Federal funds.

As far as Church teaching goes, putting animal cells into human embryos is unacceptable as well as gestating a human fetus in animals.

“Changing the genetic identity of man as a human person through the production of an infrahuman being is radically immoral.” (International Theological Commission, “Communion and Stewardship: Human Persons Created in the Image of God,” July 23, 2004.)

The question is how much human cells can you put into an animal.

Not all introduction of human cells into animals is ethically problematic. For example, growing human cancer tumors in mice to study disease processes and evaluate treatment strategies.

What the NIH is proposing funding is putting human pluripotent cells into very early animal embryos. The problem is that they don’t know where those cells are going to go.

They’ll try to coax them into certain areas, but they really don’t know. And the worst case scenario here would be that the human cells could end up forming human gametes (eggs or sperm) or brain cells within the animal’s body.

That is why, if nothing else, the NIH’s moratorium on funding this research should stay in place.

Your Chance to Speak Up

Now, what you may not have heard (I know I missed it!) is that the NIH is taking public commentary on the proposed changes to its guidelines until September 4.

This is important because right now the only ones involved in this decision-making process are those who have an interest in expanding this research and have not been known to uphold the intrinsic dignity of human life in scientific research.

Will our voices sway their decision? I wish I was more optimistic about the prospect of ever stopping this work at this point. But that shouldn’t stop us from identifying the lines that should not be crossed.

Let’s at least show the NIH that we are paying attention and have something to say about the matter.

Scientists love to give themselves “ethical guidelines” — only to “reevaluate” and revise those guidelines when they are no longer convenient.

A perfect recent example of this came this May when scientists in two separate studies reported keeping embryos alive, healthy and developing for 12-13 days. In both studies the embryos grew autonomously and began processes that lead to organ development.

This was significant because for decades international policy has limited embryo research to the first two weeks of development. Until now there had never been reports of anyone cultivating in vitro human embryos past seven to nine days.

The authors hope that the updated guidelines will allay various ethical concerns, and avoid the need for strict government regulations that could impede the progress of science.

And here is the money quote from Charles Murry, a member of the committee that updated the guidelines, and a bioengineer at the University of Washington in Seattle (my emphasis):

“Self-regulation is the best form of regulation,”…“The biomedical community is best poised to strike the balance between rapid progress and safe, ethical research practice.”

The sad thing is, even when governments do decide to form policy regulating research, it’s often only the scientists they want to hear from.

In the latest episode of BioTalk, Dr. David Prentice and I discuss the need for more than just scientists to be involved in public policy discussions regarding human-embryo experimentation.

(If either embed does not work click for direct links to: video, audio)

The conversation has become too quiet

Yes, when forming policy, it is important to hear from “the experts”, but you also need to hear from everyone else who might be a stakeholder. And when we start talking about human genetics and the future of the human race we’re all stakeholders — and we should not neglect or be afraid to speak up.

Cloning and embryo experimentation may not be major news these days, but that doesn’t mean it’s not being done.

Unfortunately, the conversation has become too quiet lately, especially among pro-lifers.

10 years ago the “great stem cell debate” was raging, now all pro-life news and information I see is almost exclusively about abortion and euthanasia. Rarely do I see anything about cloning come across my feeds, and when I do it’s often accompanied by outdated arguments about embryonic vs. adult stem cells, etc…

I want to again remind you of something Zachery Gappa said last year in an article encouraging pro-lifers to take some time to learn more about bioethics:

Pro-lifers will lose the next stage of this argument unless they become more informed. The graphic abortions we have known over the past few decades will soon be largely a thing of the past, but we may be killing more unborn children than ever before.

As Dr. Prentice pointed out, “We always talk about the horrific loss of life in abortion in the U.S. since 1973, and we’re up to somewhere around 55 million young lives lost. I think we’re probably in that same neighborhood with human embryo research and the destruction of those human lives.”

And this research is roughly 10 years younger than legalized abortion.

The Brave New World may soon be upon us, whether we like it or not, but let’s not watch it advance without putting up a fight!

Last year, a series of undercover videos exposed appeared to show Planned Parenthood executives negotiating the sale of fetal body parts from some of their abortion clinics.

These videos triggered a Congressional investigation into the relationship between the abortion industry and “fetal procurement organizations” and whether or not there is any “buying and selling” or profit being made, which is against the law.

Most pro-lifers focus solely on Planned Parenthood’s role in “selling” aborted fetal body parts, but Rep. Blackburn did a good job of explaining why this is much larger than just Planned Parenthood.

I spoke about this last year with Dr. Stacy Trasancos, who has noted that, “Planned Parenthood could shut down completely tomorrow, but the use of aborted fetuses and fetal body parts will not stop.”

Currently the panel is investigating the “buyers”, seeking bank records from fetal procurement agencies — who then sell them to researchers — in order to determine whether they, too, are making a profit from the sale of aborted fetal body parts.

On one invoice, they found taxes being charged on the sale of “baby brains”. Said Blackburn,

If you’re charging tax, that would lead you to believe that it’s not like our organ donation programs… that this is something that has moved into a profit motive structure, and we’re very concerned about what that does to women and babies.

This “profit motive structure,” notes Blackburn, turns every pregnant woman into a “profit center” not just for abortion clinics, but for fetal procurement agencies, as well.

There is already evidence that some procurement companies work with abortion clinics to review medical files of women scheduled to have an abortion – without their consent – in order to assign body parts orders to babies who match the requested gestational age and sex.

But, what happens when the demand outweighs the supply? Something Rebecca and I also discussed in this episode of BioTalk.

In one of the undercover videos, Cate Dyer, CEO of StemExpress, admitted that they were working with “almost like triple digit number clinics (not all PP) and we still need more.”

Blackburn did not say what type of action or suggestions we can expect to come from the Select Panel investigation, but I only see one solution: We need to stop using tissue from abortion in research.

For decades the use of fetal material has been a research tactic that is 1) considered ethical and legal, 2) coordinated across continents if necessary, 3) funded by governments and private foundations, 4) demanded by industry, and 5) applauded by the scientific community.

The longer this remains a common, legal practice, the more the scientific community drives the demand for aborted fetal body parts.

We should be treating this much like we treated the embryonic stem cell debate — putting pressure on 1. lawmakers to defund and outlaw this research and 2. scientists to pursue ethical alternatives. If we do not, we risk ending up with a medical system that is inextricably linked to the abortion industry.

During a recent appearance on Late Night with Stephen Colbert, talk show host and former news anchor Katie Couric made the following comment:

“I was at a scientific conference at the Vatican a couple of weeks ago and I thought it was actually very progressive of the Catholic Church to want to understand science…”

In a previous episode of BioTalk, Rebecca and I discussed the common view of the Catholic Church being “backward” when it comes to science and how she actually has been and is now one of the most forward-thinking or “progressive” institutions in the world — especially in the area of science and biotechnology:

The Church is always condemned for not giving short-sighted acceptance to every scientific or technological breakthrough. However,

If technical progress is not matched by corresponding progress in man’s ethical formation, in man’s inner growth (cf. Eph 3:16; 2 Cor 4:16), then it is not progress at all, but a threat for man and for the world. (Spe Salvi, 22)

So, the Church takes the time to evaluate what the research involves and whether or not it respects the dignity of the human person.

Stem cell research is a good example of this.

By and large the great “stem cell debate” has died down in the general public, but the “controversy” is far from over.

As Rebecca and I talked about in another, more recent episode of BioTalk, and Stacy Trasancos discusses here, cells from aborted fetuses are still a hot commodity in modern research.

Also, in two separate studies scientists have reported keeping embryos alive, healthy and developing for 12-13 days. In both studies the embryos grew autonomously and began processes that lead to organ development.

This is significant because for decades international policy has limited embryo research to the first two weeks of development. Until now there had never been reports of anyone cultivating in vitro human embryos past seven to nine days. Now scientists are calling for an extension of the 14-day rule.

The Catholic Church obviously objects to these approaches to regenerative medicine, because “[t]he destruction of even one human life can never be justified in terms of the benefit that it might conceivably bring to another” (Pope Benedict). The intentional creation and destruction of human life, through cloning and ESC research violates the inherent dignity of all human life (at any stage).

But the Church doesn’t stop at merely condemning ethically problematic research. She also promotes dialogue between science and ethics in order to guide research in a direction that is truly fruitful and beneficial to humanity.

The scientific conference that Couric attended was the thirdinternational conference on regenerative medicine co-hosted by the Vatican’s Pontifical Council for Culture and the Stem for Life Foundation.

The conference gathered the world’s leading cell therapy scientists, physicians, patient advocates, ethicists, philanthropists, leaders of faith and government officials to discuss the latest cellular therapy breakthroughs and engender hope for the future. This year’s focus was particularly on pediatric cancers and rare diseases, as well as diseases that occur with aging.

In his address to the conference, pope Francis recognized society’s, “educational urgency, together with the maturing of the intellectual faculties of the students.”

“In this pedagogical frontier,” the pope said, “it is necessary, in the context of the life sciences and medical sciences, to design interdisciplinary courses reserving a substantial space for human formation with a fundamental reference to ethics.”

Both academic and industrial research, the pope continued, require “constant attention to moral issues in order to be a tool for protecting life and the dignity of the human person.”

Several months ago I saw a trailer for the movie Me Before You and got a little excited. A modern romance featuring a disabled main character. It looked so positive and promising.

I should have known better.

Apparently Me Before You, which hits theaters next weekend, was a novel first and many disability rights activists are speaking out about its less-than-romantic ending. Some even protested at the movie’s UK premier.

“I had heard this was a good book and read it. I was horrified,” a friend of mine told me.

So, consider this your warning.

Once again we have a story involving disability told through an entirely able-bodied lens. The message: It’s better to be dead than disabled. And, as in Million Dollar Baby before it, instead of learning to live with his disability, the main character gets help ending his life.

Dominick Evans and Kim Sauder, who have both read the novel, have the must-reads on all that is wrong with Me Before You — not the least of which is that neither the book’s author nor the filmmakers’ seem to have bothered to even try to consult anyone actually living with the disability they portray.

Defenders of Me Before You will brush off criticism of the story because, “some disabled people people actually feel that way, so who are you to judge?”

While that may technically be true, and, yes, a spinal cord injury is devastating to come to terms with, the reality is that the Daniel Jameses and Dan Crewes of the world represent a very tiny percentage of patients who cannot accept or live with their injuries. Most paralyzed people are quite happy to be alive.

Of all the things Evans and Sauder mention, however, this part really stood out to me. Speaking of the female lead’s traumatic past, Sauder writes:

It’s bad enough that rape was used as character development, but it is made worse when it is clearly something Louisa is meant to get past with Will’s assistance but Will isn’t supposed to learn to live with being paralyzed. It clearly sets up the idea that people can and should be expected to come to terms with certain kinds of trauma but not others.

I found this particularly ironic because in the Netherlands recently, where assisted suicide has been legal for decades, a woman in her twenties was actually given a lethal injection after doctors and psychiatrists decided that she had “incurable” post-traumatic stress disorder following years of sexual abuse as a child.

It went ahead, according to the Daily Mail, “despite improvements in the woman’s psychological condition after ‘intensive therapy’ two years ago.”

So, to the able-bodied movie-goers across the nation who will get misty-eyed and praise Will Traynor’s selflessness act of “love” and think every disabled person should have the same “choice”, consider this: it is well established that once death becomes acceptable treatment for some pain and suffering, it eventually becomes the answer to all.

Dr. Theo de Boer, a former member of a euthanasia review board in the Netherlands, recently wrote about the country’s ever-expanding criteria for euthanasia, which was once limited to terminal illness, but now includes dementia, psychiatric illnesses, and accumulated age-related complaints.

And then, of course, there’s Belgium, where Parliament passed a euthanasia law in 2002, and the public was promised that there would be strict safeguards. Now, 14 years later, infants and teenagers can be candidates for a lethal injection and there are seminars in nursing homes promoting euthanasia as an appropriate option.

As my friend, Dr. Gerard Nadal, put it recently, “If death is the best that the most educated amongst us has to offer those who live in the grip of fear and suffering, then western civilization is officially dead.”

Instead of seeing what has happened in Belgium and the Netherlands as a warning sign, Canada is on the verge of passing some of the world’s most radical, far-reaching, assisted suicide legislation. And, even closer to home, it looks like New York could become the 6th state in the US to make Dr. prescribed suicide legal.

If all that wasn’t bad enough, it also turns out that states that have assisted suicide also have a statistically significant increase in other suicides.